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Just to give an update on our six year old son. His antibody tests were negative, but he did have the Celiac gene. We discussed options with his GI (who believes he doesn't have Celiac based on his antibody tests). After some cajoling on my part, he agreed to have us go gluten free for six months. He would consider a diagnosis if my son gains adequate weight. So far we have noticed:
1. A HUGE increase in his appetite! He used to take one or two bites and say he was full (thus the lack of weight gain). He has eaten EVERY meal since becoming gluten free.
2. He is so much happier and easier to be around.
3. He has stopped sweating so profusely. He used to soak the bed at night and have occasional hot flashes.
4. No headaches!!
So, I am convinced!! I'm not entirely sure why we would need an official diagnosis at this point. My son is so happy with the way he feels, he has no issues with turning down gluten-filled sweets. I can't believe after all this time it was gluten that was making him sick. I am one happy mama! Jess

I posted in the babies/kids section, but I thought this could go here because genetics don't change with age! My son is six and we think he has multiple Celiac symptoms. His ttIG was low, so his GI wanted to drop the Celiac idea. We persisted and he decided to check him for the gene. I also looked at all of his old blood work and found a ttIG from Feb.
Gene results are as follows:
HLA Class II, Locus DQB*, Allele 1 02:01
Results: Positive for HLA-DQA*05 and HLA-DQB*02 alleles
HLA Class II, Locus DQB*, Allele 2 05:01
Patient has the HLA-DQ2 antigen, but does not have the HLA-DQB antigen
HLA_DQB Genotyping Interpretation
If less than 2 alleles are reported for a locus , the patient is likely homozygous.
I am wondering if he has copies of the gene from both of us based on his results. I don't really understand the Allele 2 part of it.
I also found out his overall IgA had gone from 71 to 59 since Feb. and his ttIG went from .8 to 2.6. I thought his overall IgA should be going up since he is growing!
I feel like I am really going to have to work on his GI for a diagnosis and need all the back up info I can get. Thanks in advance. This site is amazing!
Jess

Okay. I just received his blood results. They say:
HLA Class II, Locus DQB*, Allele 1 02:01
Results: Positive for HLA-DQA*05 and HLA-DQB*02 alleles
HLA Class II, Locus DQB*, Allele 2 05:01
Patient has the HLA-DQ2 antigen, but does not have the HLA-DQB antigen
HLA_DQB Genotyping Interpretation
If less than 2 alleles are reported for a locus , the patient is likely homozygous.
I have not yet spoken with his doctor. His appointment is on Tuesday. I know he does have the Celiac gene. I am wondering based on the results if he is homozygous for it (which would make me more sure of the diagnosis).

He had the test on Friday. It should take about two weeks to get back. We are also going to have his dad tested as he has always had bowel issues. If all tests are negative, we will give it a rest. If anything is positive, we will pursue a Celiac diagnosis! Thanks all for your great advice!

Thanks so much!
Total IgG is 534 (Online says should be higher than 667)
Total IgA is 59 (online says should be higher than 79-but that seems high)
Total IgM is 61 (online says should be higher than 40)
These are low (but on the chart) on the reference range provided by the lab, but clinically low on a chart I found for 6-8 year old kids.
Not sure what to go by!

So, we got his results back! He is low in all of his IgGs, especially IgG1 (421). The IgA is normal. His TT IgA was only 2.3 and his TT IgG was 0.48.
So the Celiac tests were negative, but I wonder if his low over all globulins had anything to do with this? The GI will call me on Tuesday. I'm wondering how much I should push for the biopsy or just try gluten free for a while. I'm pretty convinced he's got issues with gluten after monitoring his diet for two weeks.

Hello!
My 6 year old son has a long history of medical issues. He has craniosynostosis, which was treated last year (with major surgery to open his skull and reshape it).
Starting in January 2012, he began having fevers and mid abdominal pains. He weighed 40 pound then. He continued to look pale and thin, so he had every test run my pedi could think of (except for Celiac, I guess). He was seen by a GI who diagnosed him with constipation based on his CT scan only. He was on major laxatives for five months with no improvement with his pain. A new GI has taken him off laxatives (he never was constipated) and did a follow up in three months. He noticed at the three month follow up my son has grown very little and has not gained weight. He now is up to 41 pounds (1 pound in 10 months). He still feels sick three days out of the week, is dizzy with headaches and occasional stomach pain and very grumpy. He catches viruses often and has a hard time getting over them. He seems to be delayed in school.
He also had low globulins on a recent blood test, which my pedi said was normal (the GI begs to differ). Our GI just ordered all the antibody tests for Celiac. My husband and I are almost wishing for Celiac, as we would do anything to help our son feel better. The other option is that all his symptoms are related to pressure in his brain, which would be a worse diagnosis.
So, what do you think? Celiac? Thanks so much! Jessica

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Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!